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Is your doctor comfortable/willing to support reduced doses of Tymlos?
Osteoporosis & Bone Health | Last Active: May 25 10:17pm | Replies (20)Comment receiving replies
@lhankins I agree 100%. I can only hope the manufacturer is in the process of studying the lower dose options and can release that data ASAP for providers. It took me begging and pleading my case to just get just a "one-month" refill of Tymlos (after completing my first 3 months), because I am only able to tolerate (barely) a half-dose. My provider was terribly relictant to extend my Tymlos and is unable/unwilling to provide support or recommendations regarding my dosing strategy. I realize my body needs to drive that decision anyways, but it's CRAZY (and sad) that I have to take this on without my provider's full support. You would think that somebody willing to continue with side effects and utilizing a lower dose would benefit other people in their practice and they would take advantage of my willingness/desire to remain on the med and follow me extra carefully in order to see if they should consider expanding this option to more of their patients. Healthcare providers can be so darn fearful of liability that patients on newer meds are being hurt in the interim, while waiting for future studies and data to be collected and released. What makes this so frustrating is the fact that so many people on this forum are reporting incredible improvements on their DEXA bone scans from reduced doses. So, what's to lose, if bone markers are monitored and the drug has a short half-life that can be stopped at anytime foe another treatment? Little-to-nothing to lose, but LOTS to gain??? Frustrating and sad. Radius needs to get off their butts, release more clinical trial data, and communicate with health providers.
Replies to "@lhankins I agree 100%. I can only hope the manufacturer is in the process of studying..."
@cathyf31 There is nothing to gain for biopharmaceutical company Radius to invest in showing that people need LESS of their product. And the NIH research budget is being cut. So "waiting for future studies and data to be collected and released" on this existing medication is futile.
Doctors, such as your provider, are right to fear liability and I get why they are unwilling to step outside of fully FDA approved protocols. When something goes wrong people want to blame someone. I have a friend who was an obstetrician. She calculated that her practice had to function for months just to pay for insurance. She advised her very-intelligent children not to become doctors, and they didn't. Plenty of people here have noted that it takes months to get certain doctors appointments because we have a shortage of doctors.
I am sorry about your frustration with your provider, but I blame the system. And I am thankful that your doctor is still practicing and doing what good he or she can. (I am a retired engineer and have never worked in the medical field.)
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@cathyf31
Liability is what unfortunately drives much of the decision making for these drugs. I couldn’t even get my rheumatologist to order up bone turn over markers; he stated that endocrinologists do that. When I asked for a referral from my primary there was a year long waiting list to see an endo in my area. I am now on the long road of BHRT, weight lifting, high protein intake and supplements praying I can come up out of this hole. It’s beyond frustrating because I do believe if there was a ‘will’ to make these changes that could benefit so many it would happen.